I know my content has been a bit lacking besides my deal posts (awesome ones!). I have been having a hard time and a lot of pain. Holding my arms in a position to type is very difficult. In fact I have been in tears all evening. I am doing my best to suck it up and post this. I have also been having some issues with walking.
Ok, my doctor is moving. So I need a plan of action. I need to get moving on this. The longer I go untreated the worse my situation will be. So I am using this post to make a list of what I know I need to do! The list in no particular order… If you have any ideas about things I post please feel free to share them in the comments! I look forward to input!
1. Find a doctor (that one is pretty obvious right?). There is a lady taking over my Rheumatologists office, so I still have that. But, I need someone that deals with RSD. I need a Neurologist that will see me as a self pay patient until I can get insurance. I also need someone that can act as a Primary Care Physician. The biggie…I need a pain management doctor. So I googled “pain management RSD Denton” and came across a doctor that is pretty well known in the area. Everyone knows where his office is. It’s like a fixture of the town. Anyhow, it was a video of him being interviewed about RSD! YES! He knows what it is and understands it completely! He knows how painful it is and how it changes your life. He is a primary care doctor, he also is a pain management specialist! SCORE! I am going to call on Monday! I did find a neurologist in Plano that takes self pay. I will just need someone to drive me there. I swear I don’t drive farther than 5-10 min from home. I can’t.
2. I need a bike! I need to be active, even though I don’t feel like doing anything but crying on the couch…that is NO WAY TO LIVE and dangit, I want to live my life! There is a sweet hybrid Schwinn at Walmart that wants to go home with me. It’s Red and White. I love her. She needs to be mine. I just need to save that extra money.
Hmm…anyone have a contact for Schwinn? Maybe they want to sponsor me?
3. Get a Treadmill! This is very important. It is HOT in Texas and in the winter it is COLD. I can’t do cold because it intensifies my pain so much. Muscle Atrophy is something that is most likely already happening to me. You know the saying “Use it or Lose it?”, well it applies to your muscles too! No matter how bad it hurts, movement has to be made. A treadmill would be a serious blessing for my body. I’m really not about being a quadruple amputee anytime soon…although a few friends did step up and say they would gladly strap me to their backs and haul my butt around!
4. SCHEDULE MYSELF! I have tried and tried again to stick to schedules. Something always happens and throws me off track. Well it’s pretty important that we get this household back on a schedule. I need to schedule the girls activities at my best times of the day and allow time for exercise, rest and household management. A schedule is pretty much the only way that I can get it all done. I have the means to do this, just need some time to get it done without being distracted. I already have the girls Chore Systems in place (I need to blog that!, I need to SCHEDULE IT, dur)
5. Go back to RAW! I have always felt healthier when I am eating a RAW food diet. It’s time I got back to that so maybe my body can try to heal itself into a remission. It’s very expensive to eat a RAW food diet when you do not have a garden. If you have any frugal RAW ideas, please let me know!
6. Find my support system! It’s funny how you can think one day how you have all these amazing awesome friends…then you get sick and poof…they are no longer really there. Guess they were never really my friends right? But I do have a few VERY awesome people in my life. Jeremy of course is amazing…grumpy yes, but still amazing. Jenny Lee…she is like my female soul mate. She just happens to like cats…ew. Oh and she hates coffee…what the heck? Janna! She understands things better than most people when it comes to health and depression and fighting. She listens well. My family of course! My girls (for the most part) are very helpful. My Mom and Dad. My AHG friends and my online community of friends! Yes, online people can really be your friends!! I can tell you that they check in on me more than the majority of my “IRL” friends. RSD causes a huge depression. Yes, really there is something about being in horrible pain 24/7 that makes you sad. Who would have thunk it. I need supportive people in my life. Thank you to those that are there. Especially those that are supportive and not making me feel crappy. I appreciate you more than you can know! I also need to find a church that I enjoy going to. It will be good for us.
7. Purpose. I need things to submerge myself in. Since I can no longer work I need to have things that give me a sense of purposes. This is to help keep my mind off the pain and to fight off some of the depression. I can’t tattoo, draw, write, design websites, design web graphics, hold down a job and many more things. I;m losing eve more skills. Things like tying my own shoes has become a struggle…fixing my hair, things you normally don’t even think about have become a daily struggle for me. So what I need to do is think of the things I CAN DO. Like share my story as I have been since the beginning. Maybe it will help someone else. I know I searched continuously for an answer to what was happening to me and never once did I come across RSD/CRPS. I’m going to set up a page here just to share links to resources I find about RSD. I can also put myself fully into activities with my girls through AHG. This year I will most likely be one of the leaders for Emma’s age. It will be good for me and totally occupy some of my time. So I am going to work harder at finding the I CAN DO things and dive right in!
8. Get a HOT TUB! This would be really beneficial for my pain. Maybe it would also help with the muscle spasms that have been hitting me almost all day every day lately. It’s a pricey thing, but it’s needed. Again…if you have a contact for this shoot it over to me in an email.
9. ACUPUNCTURE! Scares the crap out of me, but it’s worth a try.
10. Live life…stop stressing…stay positive and trust in God.
Girl on Fire
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Lists are always awesome! The potiental new dr you found sounds AHMAZING!
I want a hot tub. But I have nothing to justify it.
That Schwinn looks like heaven. Is it from the Cruiser line??
I hope all goes well for you Brandy!!
Lists are awesome and you look like you have a good plan of attack.
I just shot you a email for Schwinn. I hope it helps.
HUGS Brandy
Great idea about the list. I should do this myself, but I would most likely lose it even if I had it on my blog, LOL… all kidding aside I understand all that you have been going through. Been through them myself & it stays an on going thing. I hope you can get a treadmill soon, since that yo may be able to use year round & is easier than a bike, unless you can convert it into an inside bike too. the sooner you get active the better… I got stuck in the bad pain situation too long that even in PT they could not really do anything for me. No longer having any ‘littles’ around the house I have no one to chase or stimulate my head other than hubby, so it really helps having family close by & friends! My family including my 2 sons are all far away. I hope you can get to see this doc that is both a primary & pain doc, that will help immensely, just having someone who understands & knows some things to try. He may also know of some programs where you can get help ect that you have not heard of too.
Good luck sweetie, I will be checking in & praying for you 🙂
It’s so hard having to deal with all this stuff. I hope you get on a path that works for you. It’s a hard road. 🙁 Hang in there and stay strong!
I live in Arlington and am also an RSD/CRPS sufferer. I have a gently used Schwin with a brand new chain for sale if youre interested. Also there is a pain doctor who deals with RSD and has a PHD in Pharmacology as well in Dallas and Grapevine- His name is Dr. John Claude Krusz. 214-750-6664
Good luck, Michelle
Thank you Michelle! I think I will see if I can get in. Do you know if he takes self pay patients?
Also I have an excellent acupuncturist in Bedford who has helped me wittle my medication in half since I started seeing him. There are days that I am in such extreme pain that Im crying and I can see him and the minute he starts gently with the needles the pain decreases. He has an amazing technique where he doesnt have to place the needles in the affected w RSD limbs but uses other body parts to mirror the affected area. He’s excellent and the first doctor to tell me that he can help me and that things will get better. He’d be well worth the drive. 817-835-0885 his name is Mark Tryling at Meridian Harmonics. I was terrified to first try acupuncture and after my first treatment I felt crazy for not going sooner! Hope this helps! Also I just started an RSD blog if you want to check it out http://www.dum-spiro-spero-rsd.blogspot.com/
Also I have a great acupuncturist in Bedford that is well worth the drive and the only one of his kind in the area. Since seeing him I have cut my medications in half! I can be in so much pain that I am crying and go get a treatment and the minute he puts the needles in, the pain decreases. Amazingly he doesnt have to use the limbs affected with RSD- he uses healthy areas to treat the sick by mirroring the affected body parts on healthy ones which is perfect for anyone in chronic pain. He was the doctor I went to who looked me in the eyes and said I can help you and decrease your pain, dont lose hope. He is very gentle and I highly recommend him- he would be well worth the drive. (and he knows about RSD from dealing with me!) His name is Mark Tryling in Bedford/121 HWY 817-835-0885. Also I just started an RSD/CRPS blog to build awareness if want to check it out- its still in the beginning stages http://www.dum-spiro-spero-rsd.blogspot.com/ Be well! Michelle
I was feeling like crap for having missed this post. But then I realized it was while we were in Florida. Making a list is a great start and can help keep you on track.
Is your dr. Wolski? He’s kind of a weirdo– as in socially weird, but he’ll take care of you. He helped Sei after his wreck.
Tori, well I was TRYING to make an appointment with that doc. Read this post to see what happened..
https://notsoaveragemama.com/2011/08/14/progress-on-my-crpsrsd-checklist/
That’s the spirit! Whatever happens, don’t let CRPS defeat you. Always build the strength to cope and fight back, because that’s what you have to do.
I’m fighting CRPS too! I googles CRPS and hot tubs and came across your blog. Looking forward to following